Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

I have dates now Jane but as they are over 9 weeks after surgery we asked for them to start sooner so should hear next week. Asked for small tattoos too as wasn't keen on having them at all. So all set to start radiotherapy asap now.
Started Letrozole yesterday too. So far so good.
Love Linda xx
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi Linda,

 

Thanks for your reply. By the way, I can recommend a fab book- The complete guide to breast cancer' which came out this year. It's written by two breast cancer surgeons, who both had breast cancer and have survived. It's really informative and positive.

 

Best wishes
Jane

Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

No I didn't call the BCN as I am hoping to find out tomorrow but maybe I should if I don't find out. I have 20 sessions altogether including 5 which are a boost.
I asked and she said are you sure you want to know as most people don't. I knew I would regret it if I didn't. Anyway like you say it is what it is. I have thiught about it though but am sure I will forget soon.
Love Linda xx
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi Linda,

 

Glad you have got the date of your planning appointment. Did you phone the bcn in the end?

I was interested in your prognosis. I never want to know mine, as I find it too scary. Did you ask them or did they tell you?  My brother always says to me that I must remember it is just statistics, based on data that will be out of date, and treatments are improving all the time! So I keep holding on to that in case I inadvertently get told!!

 

Wishing you all the best

Jane xx

Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

I have my planning meeting tomorrow and then start radiotherapy either after Xmas in December or probably in January as they are busy.
I have a dexa scan on Tuesday and have a prescription for Letrozole which I can start straight away so maybe tonight if my OH has got it.
I was told that there is a 92% chance of living 5 years and 79% chance of living 10 years.
How do you feel Mags now you have a date for surgery?
Love Linda x
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi Mags

 

I know what you mean about the video! She seems delighted to be in a position to be able to have use of a knitted knocker!

 I am glad you have a date for your surgery albeit New Year's Eve! I'll be having radiotherapy that day. Not how I envisaged New Year's Eve but hey ho!!!

 

Best wishes
Jane xx

Member
Posts: 49
Registered: ‎15-08-2018

Re: SURGERY OCTOBER 2018

Thanks Jane - that video is so uplifting 👍😍
Got my surgery date - 31st December! That'll be a different way to bring in the New Year 😷🥂😅
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

HI Mags

 

Glad your knitted knockers arrived in time but really hope you get a date soon so you can plan.

I do know the answer to your question! The extra filling is in case you have an asymmetrical breast and you might want to put a bit more stuffing into a certain area of the knocker. Also, should you put weight on, then your natural breast would increase in size, and you can pad out the knocker so you have symmetry. There is a short video on youtube, if you google ' knitted knockers' and an American lady talks about her experience with her knitted knocker.

 

With very best wishes to you

Jane xx

Member
Posts: 49
Registered: ‎15-08-2018

Re: SURGERY OCTOBER 2018

Still waiting for mastectomy op date - going to phone breast nurses tomorrow as would like to know if it's going to be this side of Christmas.
Knitted knockers arrived today Jane 😊. So nice of these ladies to take the time to do this (and the wee messages included are just lovely ❤). I've got a question though - I'm sure it's a silly one! - why is there an extra bag of filler? Is it in case there's not enough filler in there? Or is it in case some of the original filler escapes when the knitted knocker goes in the wash?
Just in case you know the answer 🤞😊xx
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi Linda

 

Sorry about the delay in my reply. We were away all weekend! I eventually found out about my appointments from my breast care nurse. This was after trying to find out myself, speaking with the receptionist at our new cancer centre at our local hospital, my oncologist's secretary, and the staff at the radiology centre where I will receive treatment! None of them could answer my query, but my very efficient bcn telephoned me within the hour of my leaving a message, and had the answers! So it may be worth your phoning your bcn?

 

Best wishes

Jane xx

Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

My appointment is 5 weeks after surgery with the oncologist. Not been told anything else yet. Who told you when the planning meeting etc will be. I would live to know. I have a list of questions to ask. Not looking forward to it tbh but just want to get it all done and dusted. It will go into January like you Jane now and probably be over Xmas and New Year.
I am still in my sports bras but may try some non wired non padded cotton ones I was wearing as only have 2 sports bras and so I have to keep washing them. I may try some padded non wired ones to see what they look like. I just hope I can find some that look ok in the long term.
Anyway xmas shopping tomorrow.
Love Linda x
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Nice to read that you have a lovely get together in Salou next May, Mags! 

Just a quick update about radiotherapy. I have been told that the planning appointment is going to be on 3rd December, then first of fifteen sessions will start on 18th December. Because of Christmas, Boxing Day and New Year's Day, it won't finish til 10th January, and I will be having it all over the Christmas period. I will ask if there is any chance of bringing it forward, as I go back to work on 2nd January. Also I have healed really well, and the guidelines are to ideally commence within 31 days of surgery ( but to delay if they have to wait for healing). If the healing is good though, I expect it will still depend on how busy they are. I did speak with the radiotherapy receptionist and she said it is unlikely I could be seen any sooner as everyone wants to be finished by Christmas if possible. Also , Linda, I did ask about going to another hospital, but she said they would have to do their own planning, and this would delay it. I will ask the oncologist as I should be seeing him next week, as I have to see him before the appointment on 3rd December.

Also, Linda, I don't personally know if you can do yoga yet, but I would have thought so.

 

Best wishes

Jane xx

Member
Posts: 49
Registered: ‎15-08-2018

Re: SURGERY OCTOBER 2018

Thanks Jane! I'll definitely be ordering an aqua one for next May - the whole extended family are off to Salou for a big get together. I'm looking forward to getting the regular ones (I ordered two sizes as I've had so many bits chopped off, I vary between a 36a/36b depending on what I'm wearing). The ladies behind this idea sound wonderful 😇. Mags x
Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

Anyone know when I can start doing yoga? My husband thinks 2/3 months. I was going to go tonight. I can ask on Monday as I have an oncology appointmnet then otherwise. Thanks.

Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi MagsV

 

Did you see that the Knitted Knockers website will also give you aqua knockers? They are stuffed with shower scrunchies, which you remove when you wash the knocker. I got a really nice post mastectomy tankini (brand new with tags!) off ebay this week. Only £16, and when I put my aqua knocker in, it was unbelievable!! You really couldn't tell at all. 

Apparently you can swim with the silicone prosthesis that you are fitted with six weeks after the mastectomy. However, my well-endowed friend who had a mastectomy said that hers was very heavy and seemed to float when she was swimming! So I would definitely stick with the aqua knocker.

 

Best wishes for your operation.

Jane xx

Member
Posts: 49
Registered: ‎15-08-2018

Re: SURGERY OCTOBER 2018

Hi Feenix,
Thanks for all the valuable advice - much appreciated 👍. I've sent away for a knitted knocker and have joined the Flat Friends closed group (they've been extremely welcoming!).
I'll have a look in the May group chat as well and look for hints.
Mags xx
Member
Posts: 49
Registered: ‎15-08-2018

Re: SURGERY OCTOBER 2018

Thanks for your messages everyone👍. I've been reading posts but haven't added anything for a while as I'm still waiting for my mastectomy op letter. Fingers crossed it arrives soon. Looks like I'll need to join the December....or January... surgery group as well 😊
Member
Posts: 138
Registered: ‎26-09-2018

Re: SURGERY OCTOBER 2018

Hi LInda,

 

Thanks for your message. I am doing well. Generally feeling positive. I am seeing my oncologist within two weeks of my review last Thursday, so any time soon, I hope. No letter yet!

I think I am healing well so I hope my radiotherapy is quite soon. I will ask the oncologist if I can start it sooner than they anticipated at the review. They said there would be a planning stage after the oncologist appointment and it should start two weeks after that, but if I have healed enough then the sooner the better.

I will also ask him about the year's wait for surgery. If it is the waiting list then I definitely will ask about going to another hospital. The surgeon who did my mastectomy was from another hospital in any case, as he was a locum, as the surgeon I first saw on diagnosis was on maternity leave. If there are legitimate reasons for the delay, eg better outcomes after longer healing, then I would listen to the evidence, but I think it is hard to move forward until I feel 'restored'.


Best wishes
Jane xx

Member
Posts: 338
Registered: ‎05-05-2018

Re: SURGERY OCTOBER 2018

Jane thanks for your last message. I am glad I have helped. I feel the same as I feel lopsided as 1 side is higher as it has been lifted. My husband says it is not noticeable. I know I should be glad that all the cancer was removed. I am keen to get the other side done asap. When is your radiotherapy? I would make enquiries privately to see when they say you could have it done. Could you get it done on the NHS but at another hospital sooner maybe? How are you getting on?

Love Linda x

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Member
Posts: 678
Registered: ‎30-03-2018

Re: SURGERY OCTOBER 2018

Hi Margaret.vass.... I’m from the May surgery thread..there are a few of us on there who haven’t had recon. Just popped on to say hi. I had a mastectomy, no recon, August. I “looked” as soon as I was awake in recovery. I had a dressing on but I know this isn’t always so. I used paracetamol and ibuprofen regularly for the first few days then as I needed them.  I had a drain in overnight only...just tied it to my pj bottoms...had to remember though when going to loo!!!  This was my third op, like yourself, and I found I recovered really well and I was out and about my first post op day. I did have a seroma which was relatively small but it was drained a couple of times. After about 5 weeks I noticed I had cording. I was referred to physio and I have extra stretching exercises and massage to do.  I’ve never felt self conscious and I also go out flat. I had front fastening bra given to me at my pre op and a couple from Asda online range (I’ve not seen them there lately though...you may find the same type on amazon). I’ve also got a few Peacock pull on bralets..they are £5 and have a pocket you can put a softie/KK in...Asda do similar. I did the usual post op exercises, which I still do twice a day. I started gentle massage after I was well healed, 4 weeks.  I’ve got a silicone prosthetic which is good but I also use my softie/KK as well as going flat. I’m also a member of the closed flat friends group... you’ll find it’s a very supportive. They also have meet ups. Hope you get your surgery date soon. If you want to ask anything, please do so.

best wishes xx